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Title: I didn't need to look at the clock Post by Lonnie on Oct 2nd, 2007, 2:04am I thought it was over. It's been almost 8 weeks I can't remember anymore. I just went nearly 2 days so I thought thats it.. Had 2 shadows thats all. Then a mild CH at 8. The beast returned at 1:30am. I did not need to look at the clock. I am tired........ |
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Title: Re: I didn't need to look at the clock Post by sandie99 on Oct 2nd, 2007, 3:59am Lonnie, I'm so sorry... [smiley=hug.gif] I hope that this was just the goodbye visit. PFDANs, Sanna |
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Title: Re: I didn't need to look at the clock Post by Miz_D on Oct 2nd, 2007, 4:30am Hey Lonnie, Just wanted to let you know my thoughts are with...hope your cycles over soon. D |
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Title: Re: I didn't need to look at the clock Post by schaan on Oct 11th, 2007, 2:15am on 10/02/07 at 03:59:52, sandie99 wrote:
since this is the first time i saw it referenced heres a quick ??? it seems as if the last of my attacks are the worst, is this common, and i take it your doing better lonnie? |
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Title: Re: I didn't need to look at the clock Post by Guiseppi on Oct 11th, 2007, 11:49am For me they come in slow, the first couple are 3's and 4's, several days apart. Left untreated they become 2 hits a day, morning and afternoon, then they'd fade away the same way. But like everything else, it varies widely from person to person. Guiseppi |
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Title: Re: I didn't need to look at the clock UPDATE Post by Lonnie on Oct 23rd, 2007, 4:45am Hi guys, sorry I haven't posted lately been a little depressed. They just won't go away. They seem to have picked back up to at least 2 a day sometimes three. Seems like severity has lessoned but will still get an ugly one per day. I don't understand what is going on. Oh well, I am avoiding taking anything since I see a pattern of folks saying it may lessen the number per day. Please leave me your thoughts on that and two other things: 1)Tell me more about mushrooms. I keep hearing it brought up 2)Anyone hear of Marajauna helping 3)Flying, have atrip comming up next week will that cause or worsen the CH? Thanks guys and hope everyone is doing well and your cluster all end!! Lonnie |
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Title: Re: I didn't need to look at the clock Post by Jill on Oct 23rd, 2007, 5:00am Hi Lonnie, I am sorry that you are still getting hit - I sure do hope that they go away soon for you. Why are you avoiding taking anything? I didn't quite understand that but that might just be me. Sorry. :-/ And I don't know much about shrooms, someone will be along I am sure that can help you. You can check out the clusterbusters site though, they have good information there about alternative therapies. I have never heard that marijauna could help CH but I don't have experience with it either. I do know about flying though, at least for me and from what other people have said. I always get hit while flying, immediately after taking off and landing. That is just me though. I know some people get hit while flying while others don't, interesting how it varies among sufferers. The best idea is to go armed. Take what helps you on the plane, like energy drinks or if you take injections or whatever. This way you are prepared if you do get hit and if not, than that is even better. I hope that this helps at least some - others will be along with better information soon. I hope that the beast leaves you alone very soon. Jill |
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Title: Re: I didn't need to look at the clock Post by Lonnie on Oct 23rd, 2007, 5:46am Thanks Jill, what I meant to say was I have heard some say that if they avoided meds, of course the severity will dicatate when you can do that, they wouldnt have as many per day some of the possibly being rebound. Maybe I dreamt that. I am nearly insane now LOL Thank you so much for your kind words and support!! Lonnie |
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Title: Re: I didn't need to look at the clock Post by Jill on Oct 23rd, 2007, 5:54am Quote:
You are welcome Lonnie... I understand what you mean about not taking anything - you are not insane, I have had heard that too. I went off all my meds except for the two I have to take because they werent working. No point to keep taking something that is doing nothing. However, going off of them didnt slow down my attacks at all. Go figure. ::) If you don't want to go on meds again, try the energy drinks. I have heard a lot of good things about them from a lot of people. For me, they don't abort hits but they help with shadows and that is something at least. And I know what you mean about going insane.. between the lack of sleep and the pain, how can we not? :) I really do wish pain free days for you. Jill |
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Title: Re: I didn't need to look at the clock Post by Lonnie on Oct 23rd, 2007, 6:09am Thank Jill. Have good pain free day my dear. Lonnie |
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Title: Re: I didn't need to look at the clock Post by barry_sword on Oct 23rd, 2007, 6:33am Hi Lonnie. Sorry you are having a tough go of it. I think you are referring to what we call rebounds when taking meds to control the beast we prolong the cycle in doing this. I decided at the start of my cycle I was going to do it med free, well, this cycle was by far the worst for me and after a few kip 9's without anything I could not take it anymore. I phoned my Neuro and got a script for Predisone and Verapamil. The Pred stopped the Beast in his tracks and I got my sanity back somewhat. I have since (still in the same cycle) got a script for o2 and it has been a life saver for me. Have you talked to your Doc about any of this? Read and print off the o2 info to your left and try it if your Doc will script it for you. Red Bull works for quite a few people here but like the o2 you must nail it back as the very first sign or twinge of a CH. Hope you find something that works for you. Never give up, Barry |
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Title: Re: I didn't need to look at the clock Post by Maffumatt on Oct 23rd, 2007, 7:31am Hang tough Buddy, you're not dancing this dance alone. Some guy in Kansas is dancing with ya.......... |
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